One year...💙
Today marks the anniversary of my initial MND diagnosis....consultant neurologist said 'suspected' & that she would arrange for me to see her colleague at St George's for a second opinion. (Didn't happen until June)
My view is once the word suspected was used it was more or less a foregone conclusion. Neuro rehab community team services kicked in within 2 weeks.
So back then I was walking with a r foot limp/drop....several falls outside. Walking felt like 2 steps forward and one back....I described as walking through mud
A general feeling of weakness and a sense of this was something serious. I remember saying to my GP I'm worried this could be MND....he said highly unlikely...sadly he was wrong.
So now a year on I'm using a self propelling wheelchair indoors (this week), right-hand is very weak...for example cutting with a knife or using scissors not possible. My r little finger appears to want to leave & goes off to the right. Index finger nearly useless. Left hand weak...however better than the right.
I'm eating (carefully to avoid choking) moist foods in general. Drinking ...again carefully. Drink 2 ensure drinks daily to bump up calories & protein.
I'm using NIV all night and a couple of hours in the day when I'm resting. Breathing is weak....cough is weak...using breath stacking to try & improve. Awaiting home visit from respiratory team (hospital).
Voice is indecipherable (mainly)...although some times better than others. Started using my predictable app as I banked my voice.
Throughout this year I've been very grateful to have this forum....gives me a sense of not being alone with this...my MND family.
No idea how long I'll be on this 'journey' (hate using that term) because there seems a huge difference between us all....& individual choices we make along the way have an impact.
Here & now I'm alive & kicking. Taking each day as it comes & although there are dark days on the whole I'm ok.
I live in hope 🙏💙
My view is once the word suspected was used it was more or less a foregone conclusion. Neuro rehab community team services kicked in within 2 weeks.
So back then I was walking with a r foot limp/drop....several falls outside. Walking felt like 2 steps forward and one back....I described as walking through mud
A general feeling of weakness and a sense of this was something serious. I remember saying to my GP I'm worried this could be MND....he said highly unlikely...sadly he was wrong.
So now a year on I'm using a self propelling wheelchair indoors (this week), right-hand is very weak...for example cutting with a knife or using scissors not possible. My r little finger appears to want to leave & goes off to the right. Index finger nearly useless. Left hand weak...however better than the right.
I'm eating (carefully to avoid choking) moist foods in general. Drinking ...again carefully. Drink 2 ensure drinks daily to bump up calories & protein.
I'm using NIV all night and a couple of hours in the day when I'm resting. Breathing is weak....cough is weak...using breath stacking to try & improve. Awaiting home visit from respiratory team (hospital).
Voice is indecipherable (mainly)...although some times better than others. Started using my predictable app as I banked my voice.
Throughout this year I've been very grateful to have this forum....gives me a sense of not being alone with this...my MND family.
No idea how long I'll be on this 'journey' (hate using that term) because there seems a huge difference between us all....& individual choices we make along the way have an impact.
Here & now I'm alive & kicking. Taking each day as it comes & although there are dark days on the whole I'm ok.
I live in hope 🙏💙
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